About Melissa

Melissa is a licensed attorney and the co-author of “Afraid of the Doctor: Every Parent’s Guide to Preventing and Managing Medical Trauma,” the first book to guide and support parents regarding medical anxiety and trauma. She is also the founder and past president of Project Alive and a sought after speaker on rare disease, trauma, and advocacy. She currently consults on clinical trial design and patient outcome measures at Doulots, in addition to serving as a Patient Representative to the Food and Drug Administration (FDA) and on the Family Advisory Council of Vanderbilt Children’s Hospital.

Her youngest son being diagnosed with the rare disease Hunter Syndrome (also known as Mucopolysaccharidosis or MPS II) in 2009 deepened her reliance on God’s sovereignty and faithfulness in her life. None of us knows the number of our days, so she felt called to serve the Hunter Syndrome community with the skills God had given her.

During her tenure, Melissa and her team at Project Alive developed innovative and award-winning fundraising campaigns, such as a multi-episode docu-series, to support research to cure Hunter Syndrome. These campaigns significantly increased public awareness of the disease, which affects only approximately 2,000 patients worldwide, bringing their message to an audience of millions.

She has been published across a variety of formats, from publicly-focused The Huffington Post, Scary Mommy, and Love What Matters to rare disease/chronic illness publications like The Mighty, Rare Disease Report, and PharmaPhorum, to medical journals such as Metabolic Genetics and Metabolism and BMC Medicine.

She received the Rare Champion of Hope Award from Global Genes and the Directors’ Award from the National MPS Society for her work in advocacy in the rare disease community. She is passionate about patient engagement throughout the drug development process, having participated with her son in a clinical trial since 2010, having served on the first Patient Engagement Collaborative with FDA/CTTI, and having served on two international consensus conference panels recommending clinical research endpoints and measures for the mucopolysaccharide disorders.

Melissa has also worked as a health care attorney and an adjunct professor of legal writing and healthcare regulatory law and currently contracts on independent investigations of allegations of abuse in faith settings.

You can connect with her on Medium, Facebook, Twitter, and Instagram or through the Connect page.

Available webinars featuring Melissa:

• Understanding and Addressing Pediatric Medical Trauma, Courageous Parents Network (with Meghan Marsac, MD, co-author of Afraid of the Doctor)
• Helping Rare Families Manage Medical Trauma, ANGEL AID (registration required)

Recent podcasts featuring Melissa:

• Dave Ramsey’s Legal Nightmare: Timeshare Class Action Lawsuit Deep Dive, Untangled Faith, ep. 83
• Ramsey Solutions Lawsuit Update, Untangled Faith, bonus episode
• Spiritual and Ethical Implications of Ramsey Solutions Updated Employee Agreement, Untangled Faith, ep. 71
• Loving Your Kids (Even If They Are Struggling), Toxic Person Proof, ep. 267
• Let’s Talk About Grief: Parenting a Child With a Rare Disease, Untangled Faith, ep. 36
• Our Ramsey Story, Part 5: The Got Your Six Meeting (2 of 2), Untangled Faith, ep. 21
• Our Ramsey Story, Part 5: The Got Your Six Meeting (1 of 2), Untangled Faith, ep. 20
• The Importance of Community When Processing Spiritual Abuse, Untangled Faith, ep. 13
• How We Realized We Were in an Unhealthy Organization (2 of 2), Untangled Faith, ep. 9
• How We Realized We Were in an Unhealthy Organization (1 of 2), Untangled Faith, ep. 8
• Afraid of the Doctor – Melissa Hogan and Meghan Marsac, Spread the Positive, 7/2/21
• Dr. Meghan Marsac & Melissa Hogan (Afraid of the Doctor), Behind the Blue, 6/10/21
• Beautifully Heartbreaking: One Mom’s Rare and Incredible Journey, Rare in Common, ep. 14, 3/28/19
• Hope for Parents with Children Diagnosed with Hunter Syndrome. Courage Cast: Build Your Belief, ep. 335, 1/28/18
• Halting Hunter Syndrome, Hey Human, 12/7/17
• Melissa Hogan’s Project Alive: Raising Millions for Hunter Syndrome, Retire While You Work, 8/20/17

Recent peer-reviewed publications from Melissa:

• DNL310-treated study participants with MPS II show improvements in toileting abilities
• Backpack health reduces data‐sharing barriers between the medical community and individuals with rare diseases
• Toileting Abilities Survey as a surrogate outcome measure for cognitive function: Findings from neuronopathic mucopolysaccharidosis II patients treated with idursulfase and intrathecal idursulfase
• Therapy development for the mucopolysaccharidoses: Updated consensus recommendations for neuropsychological endpoints
• Cognitive endpoints for therapy development for neuronopathic mucopolysaccharidoses: Results of a consensus procedure
• (R)evolution: toward a new paradigm of policy and patient advocacy for expanded access to experimental treatments
• Neurocognitive clinical outcome assessments for inborn errors of metabolism and other rare conditions
• Immune response to enzyme replacement therapies in lysosomal storage diseases and the role of immune tolerance induction

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